Tuesday, July 29, 2008

Last week of summer vacation for me.

This week is the last week of summer vacation for me and my mommy.  On Monday I start my suit therapy. Suit therapy will last for 3 weeks/ 6 hours a day. Then on my way home I will have some HBOT. I then have a couple days to get ready for my first day at pre-school. Today I went to a water park and me, my mom and Brianna floated in the lazy river for a couple hours. I was exhausted when we left, because I had to kick the whole way around the lazy river. My mom and Brianna just sat in the tube. I don't understand why I always have to do all the work. As soon as we left, I fell asleep in the car. We had a lot of fun. Tomorrow I am going to go to the movies for the first time. I am trying to do as much as possible for my last week of summer vacation. My sister and brother still have a month to go. They leave for sleep away camp in a couple of weeks and my dad goes out of town for work for a week. It will be just me and mommy. I Love My Mommy! She's the best.

Well as for me and my improvements. Not much to report. My mom thinks my balance is improving. Hard to tell, she says it's like watching grass grow. hee hee hee

Bye for now.

Monday, July 21, 2008

A Day at the Park........

Yesterday I meet my sister and her family at the park.  The kids had a great time playing. I put Joey on the swing. He did so great and loved it.  He sits in one of the toddler swings. At first I sat him back. He did great holding his head up and looked normal, but because he is so big, the chain would pinch his arms so I would lean him forward.  He would drop his head forward in this position. I kept saying "Joey, pick your head up, sit up and look at mommy." Every time I said this, he would sit up and look at me. We went to the park again today and he did the same.

Sunday, July 20, 2008

A Very Nice Summer!

Well summer is moving right along. We are at the end of July and school starts in a month. Jessica, Jack and I just returned for a week camping trip. We went to Lake Havasu. We had a great time.  Joey stayed home with daddy, the babysitter and Grandma Janet. From what they told me, he did great. He stayed up late at night with Grandma. Grandma can't stand hearing him cry, so they waited till daddy got home before putting Joey to sleep. He ate and slept really well. I missed him a lot. Nice to be home. We leave on another family vacation for 4 days with my sister and her family this weekend. Joey and daddy get to go on this trip.

Beginning in July I decreased more of his meds. He should be off his meds completely by Sept. He starts his Neuro Suit therapy again in Aug. I am so excited. I know he will do great. When he is done with that 3 week/6 hour a day session, we have one last summer camping trip and then Joey starts school. 

I posted more pics on dopshots. Well that's about it for now. Not to much else going on.

Wednesday, July 9, 2008

You Know you have a child with special needs when.............

A friend from my support group posted this on the support group blog.

You know you have a child with special needs when...

by Carol AnCel
  • You compare ER's instead of grocery stores.
  • You compare your child's oxygen saturations.
  • You view toys as "therapy".
  • You don't take a new day for granted.
  • You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
  • The clothes your infant wore last fall still fit her this fall.
  • Everything is an educational opportunity instead of just having plain old fun.
  • You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
  • You also don't mind if your child goes through the house tooting a tin whistle.
  • You fired at least 3 pediatricians and can teach your family doctor a thing or two.
  • You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
  • You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
  • You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
  • You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
  • Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
  • You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else 
    will be there!
  • Fighting and wrestling with siblings is considered PT.
  • Speech therapy occurs in the tub with a sibling.
  • When potty training is complete, you take out a full page public notice in the Washington Post.
  • When the Doctors/Specialist/ Hospitals etc. all know you by your name without referring to your chart.
  • You keep a daily growth chart.
  • You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
  • You phone all your friends when your child sits up for the first time, at age two.
  • With a big smile on your face you tell a stranger that your four year old just started walking last week.
  • Her medical file is several inches thick and growing.

Monday, July 7, 2008

My Birthday Party............

Hi All,

On July 5th, my mommy had a birthday party for me and my daddy. It was so much fun. All my friends and family came.  I got to eat cake and stay up late. It was a lot of fun.

So now, my mommy is getting ready to go on a vacation with my sister and brother. My brother is at skate boarding sleepaway camp. Mommy picks him up on Saturday and then she leaves Sunday for Lake Havasu. Daddy, Brianna and Grandma Janet are going to take care of me.

On another note, I am doing very good. My head control is close to perfect. I'm not rolling around the floor like my mommy wants me too yet (why when she'll hold me if I cry loud enough). hee hee hee I am having issues eating. I haven't had to have anything put in my g-tube for over a month now, so that's good. However, I don't like opening my mouth to eat anymore. Of course, I'll open my mouth to eat applesauce, yogurt, ice cream and any sweet food, otherwise I'm making it very difficult for my mommy to feed me. I'm just aware enough now to know what I like and I don't like. I have become very picky. My mommy is starting to get worried, because if I lose more weight then she'll have to tube feed me again and I'll never get my tube out. She should just feed me junk food all day and I'll eat. hee hee hee 

My mommy asks for some additional prayers when it comes to my eating. She has enough to worry about. I'll see what I can do to help her out. hee hee hee

Bye, Bye for now.